A couple months ago, I received a phone call from Primary Children's. As any heart mom would tell you, we usually don't love these phone calls. As I just starred at their name on my caller ID, I froze and started to panic. I wasn't expecting any phone call and instantly wondered if everything was ok. ... Nonetheless, this was a fun phone call! I was being notified that Madison had been chosen to receive a wish from MAKE A WISH. The purpose of their phone call was to get my permission for Madison to receive any wish of her choice. And of course, I said, "YES!"
Following my phone call from Primary Children's, I received a phone call from Make A Wish. It was our first Wish Granter's (Paul and Sarah), calling to introduce themselves and schedule a time to come meet Maddie and Cooper. I remember this phone call because I couldn't talk. I was just having one of those mommy moments where I found myself overcome with emotion and so grateful for this opportunity. (those moments seem to happen so frequently...) Paul and Sarah came to our home and spent an evening playing with Maddie and Cooper. We had a great time! The purpose of their visit was to try and figure out what Maddie might wish for...
A few weeks went by, Paul and Sarah moved away and we met our second Wish Granter (Coral). Coral invited us to come to the Wishing Place in Salt Lake. At the Wishing Place, Maddie would be able to go to the Wishing Room and make her wish. A key to the Wishing Room was mailed to Madison.
Madison holding her key. (only those with keys can enter the Wishing Room)
The entire Wishing Place was decorated just for her.
After much discussion and excitement, Madison made her wish. We helped her write it on a piece of paper and then sealed it tight in a capsule. Everyone then followed Madison into the Wishing Room.
The wishing room was magical and sparkled with many colors. There was beautiful music playing inside. It's hard to see in the picture, but that's a water fall behind the cylinder. While in the wishing room, we all took the time to read our wishes to Madison. At this point everyone was pretty emotional. This wasn't the time to wish for fun stuff; it was a time to reflect on what Madison has been through and what we wished for her future to hold.
When it was time, Madison took the top off the cylinder and placed her heavy capsule inside. Then we put the lid back on the cylinder. Her wish was immediately sent to the Wishing Wizard. We waited for only a few seconds for a response from the Wishing Wizard. The room then became really bright, shiny and sparkly. Thismeant that her wish was granted...
Sometime around June 1, this will be arriving at our house...
So... if you think I'm naughty at Christmas time, then I was naughty here too. I marched myself over to Backyard Adventures to see exactly what this looks like. IT IS HUGE! Mark measured and this new toy will take up our entire backyard. We are so excited, especially Cooper and Maddie.
When I titled Maddie's blog, "They Journey of My Heart Transplant", I never thought I would be blogging about the overwhelming, life - changing experiences that we would have the opportunity to go through. I have witnessed so much good and met so many good people as I've traveled through this journey with Maddie. Often the feelings of gratitude are so overwhelming; it's hard to find the perfect words to explain our perfect journey thus far.
A very special thank you to our medical team and Make A Wish. We appreciate you! We love you, Madison loves you!
Yesterday (Friday, April 15) I was notified that a sweet, sweet 12 year old girl also named Maddy has chosen to sponsor Madison's wish. Maddy is having a bake sale TODAY from 2-4pm at the Lone Peak Park (10140 S. 700 E.) in Sandy. All proceeds will go to Make A Wish for Madison Hiles' wish. Thank you Maddy! We're coming by to meet you...
I know, I know.. I went way too long between blog updates AGAIN. aah! I really wish that I would update more often, but life seems to get so busy and blogging is easily put on the back burner. I have thoroughy missed hearing from everyone as I find it therapeutic to write and exhale those feelings that come with being a heart mom. Your comments always give me the added energy that I seem to need. I absolutely love hearing from everyone.
How about this... I'll start with an update and then promise (to whomever is reading this - or just promise to myself) to write a blog entry everyday this week and then I should be caught up by the end of the week. And at the end of this entry, I'll give you a heads up of what to expect later this week.
So here it goes... my biggest fear (aside from heart failure and transplant) came true. Madison was diagnosed with RSV on Friday, January 28. Is there another word for terrified? Cause I have been absolutely terrified of her getting sick. I think it's because of the unknown. I had no idea how any sickness would affect her, or what I would do if she got sick. I just wish that I could bubble-wrap her beautiful heart in an effort to keep it safe and then double bubble-wrap Madison. Dang it... sometimes it is so hard and so stressful to be a mom to a heart kiddo!
Little did I know... my mama instincts would kick in and I would know exactly what to do when she got sick. During our visit with her pediatrician on Friday, I was warned that her RSV would probably worsen, especially since she was immune-suppressed. I discussed a plan of action with her pedicatrician and returned home with breathing treatments and an antibiotic for her ear infection. (oh, Cooper also had 2 ear infections, but tested negative for RSV) We returned for a follow up visit on Monday, which Madison actually looked better. I'm still laughing cause she managed to look better only for her appointment. By the time we got home, she wasn't looking so good anymore.
On Tuesday, February 1, Madison was admitted to Primary Children's for RSV and an extremely high Prograf level. Prograf is one of Madison's heart medications. It is an extremely sensitive drug that can easily fluctuate. Dramatic fluctations in Prograf can cause a person to have severe headaches, lethargic, stomach aches and even cause rejection. Upon being admitted, Madison was pale and lethargic. Looking at her reminded me of heart failure again. I found myself being so scared again. She needed some oxygen and fluids. I wasn't prepared for her needing oxgyen as her sats have always been perfect. (even through heart failure) The entire time that I sat in the ER at Primary's I was shaking. I was so scared and wanted someone to reassure me that her heart was ok. I didn't tell anyone how scared I was, but inside I was begging for someone to tell me that her heart was ok. After her chest x-ray, a resident doctor came in her room just to tell me... "mom, her heart looks just fine. It's handling the sickness very well. Now we can focus and treat the RSV." I was so relieved... But how did he know that I was so concerned? I never said anything to him about me being scared and nervous. hmmm.. just another answer to a small prayer. (it happens to me all the time..)
Madison was released on Friday and was so excited to see her brother again. She is still sick and probably will still have RSV for the next couple weeks. She doesn't need oxygen anymore, but we have continued with the breathing treatments twice per day. Because her Prograf level was such a mess, she will have a two blood draws this week. And then once a week until her level comes back to normal.
This is Madison's first sickness since transplant and I can't believe how much does affect her heart.. 1. Dehydration: increases heart rate. 2. Low electrolytes: increases heart rate. 3. Breathing Treatments: increases heart rate. 4. Low electrolytes: increase Prograf 5. Any change in electrolytes: affects Prograf 6. Any change in Prograf: affects the heart. 7. Increased Prograf: affects the kidneys. 8. Her heart can become enlarged due to the stress of being sick. This is enough to make a heart mama go crazy!
"Some people make a list of goals and accomplishments; I seem to have a list of fears. However, once I have conquered a fear.. it feels greater than any goal that I have ever accomplished." Me
More to come... 1. One Year Post Transplant Dinner Celebration. 2. Madison's annual Heart Biopsy. (Cath Lab) 3. Registering for Preschool. 4. A letter.
These were a few words that Mark and I could think of to describe this past year for us. As Madison's one-year post transplant anniversary is coming up, we are quickly reminded of the many blessings we received. We are so grateful for each of you and the love and support that you have shown our family. Thank you.
So.. you're invited... Please come and have dinner with Mark and I as we celebrate Madison's one-year post heart transplant. A special invitation is being extended to all heart families and heart kiddos, friends, family, doctors (I know you read this blog..), and transplant coordinators (I know you read this blog as well..). We would love to see everyone there. Dinner will be held at GoodWood BBQ in Orem on December 4 at 6:30pm. This will be a 'no host' dinner.
Please RSVP in the comment section below, or send me an e-mail. I'm excited to see each of you there.
I'm not sure if this will affect any other heart kiddos, but I wanted to let you know just incase. This morning I received a phone call from our pharmacy (Rock Canyon Pharmacy in Provo...) informing me that Madison's Magnesium has been recalled. They have advised us to stop using her current med and to pick up a new one. I'm not sure how many pharmacies this affected... maybe just mine... I also contacted our Transplant Coordinator (Michelle Cardon). She was not aware of the recall, but advised us to have Madison's Magnesium levels checked. hmm.. I never thought that a recall might happen.. Has this happened to anyone else?
Hello. It feels so good to finally be writing in Madison's blog. I seem to be at a place right now where I need to hear from you. Madison is doing exceptionally well and I continue to stand completely amazed at her progress. We are trying to slip back into normal life and actually starting to feel like a normal family. This is a new feeling... I've never felt like a normal family with all the heart stuff going on. lol We have lived the past 2 years with many restrictions and now we have none. That is such a weird feeling. For the first time since Cooper and Madison were born, all four of us now attend all three meetings of church. This includes Nursery... yikes! But she loves it... ugh! Madison continues to have Early Intervention two times per month. She has graduated from physical thereapy and is currently receiving speech therapy. She is a little behind compared to a typical 2 1/2 year old due to her old heart. I have been reassurred over and over again that she is catching up fast and I really don't have anything to worry about. ( but, how does a heart-mom not worry? ha ha) Here's why I need to hear from you... currently our family... ok, maybe just me... have been dwelling in a very surreal environment. (please tell me this feeling has overcome others) We are currently sitting in the one-year ago timeframe. It was one-year ago, October that we were notified that Madison needed to be listed for a Heart Transplant. And now it is November and November 30 is creeping up on me. Madison is my miracle baby and she has turned out just fine. She is absolutely beautiful with a beautiful new heart. We have been so blessed. Everything we prayed for and hoped for turned out perfectly, yet I am dealing with the one-year ago emotions. I just can't believe that we went through a heart transplant.... Holy Cow! I often want to ask, "are you serious? For real? ... No Way!" I think the emotions that I feel today might be because I was so strong during Madison's transplant and now that a year has gone by, I can let me guard down a little, only to find that a flood of emotions appear. At times it seems so silly to be so emotional. I remind myself often that Madison is just fine, but then I remember it was a heart transplant... Holy Cow! We survived and it was so scary, but we did it. Below is the beginning of a post that I started to write on October 8... I never finished it (go figure..)
Friday, October 8 has come and gone and we didn't receive a phone call from from Dr. Everitt. We definitely weren't expecting one, BUT then again, we weren't expecting her phone call last year either. October 8 marked one year since the phone call that I received from Dr. Everitt where she stated and explained to me in great detail that we needed to list Madison for a Heart Transplant. It still gives me chills and the tears instantly come as I think about it. I had never been so terrified in my life. As I listened to Dr. Everitt, I stood in the hallway of my little home, with tears running down, and starred at Madison as she sat eating breakfast in her highchair. I remember this day just as it was yesterday and I am still so terrified. The butterflies of nervousness have never gone away. Maybe that's just part of being a heart-mom... I don't know. If nothing else, the terrified feeling is a great reminder of the lessons I have learned throughout this past year. Two of the lessons include, The importance of life and the meaning of a family.
Madison's journey continues to be successful as she just had cardiology post transplant visit number 27. (about 41 appointments since birth) Sometimes I just have to laugh.. that is a lot of appointments! Holy Cow! But I am also grateful; there are other heart babies who have had a lot more visits. Madison's appointment went well. We were able to meet the new cardiologist. I can't remember her name. Has anyone met her yet? She was nice, but I do miss Dr. Everitt. I get so attached and don't like change, especially when it comes to doctors. Although Maddie's appointment went well, it was during this appointment that I realized... she's officially 2! If there was a hidden camera in our room, someone was laughing pretty hard at us. Madison was into everything! I came prepared for her appointment.. I had a whole bag of toys, books and snacks packed just for her... she didn't want any of it. Instead she wanted to rearrange all the baby hospital gowns. Yes, the ones that are sanitized and folded very neatly in the exam table drawers. Madison is also going through a phase of taking all of her clothes off, including her diaper. She can undress herself faster than I can blink, so at one point, she was completely naked and rummaging through stuff. She also wanted all the band aids and binkies. For an entire hour, I was guarding the exam table like it was a hot stove, trying to redirect her. It was exhausting and all could think about was my diet coke sitting in my car. No laughing.. we ended up coming home with three binkies and a handful of band aids. I'm not even going to ask if we were charged for them. To give Madison some (small) credit.. we did have a 45 minute wait to see the doctor. And her cardiology appointments are usually about 3 hours long. In addition to a busy two year old and a long appointment, the lab messed up on Madison's lab order. Few things tick me off more than a lab tech that can't read doctors orders. It was over an hour wait for the IV team, so I took a deep breath and let the lab tech draw Madison's blood work. I even pointed to the exact vein that Madison prefers. Again, she didn't cry. It went well until they called Madison's name over the intercom at the hospital for us to return back to labs. Upon returning, I was told that they forgot to get her Prograf and Cellcept levels. What? Were they kidding? Those are the two most important levels for a transplant patient. I explained to them that I already gave her meds to her and so we would need to redo her labs the next day. And that is what we did. Dang it. I was ticked. Her labs have lead to more Prograf drama. Nothing serious, just transplant drama. Her Prograf level came back quite low. I've decided that if drugs are a gender, than Prograf is definitely female. Anyway since increasing her Prograf, she has broken out in a bumpy rash? Has anyone seen this before? It looks like goose-bumps. They are white little bumps; not red, but it is spreading. It started on her bum cheeks, thighs, stomach, upper and under arms. Today her ankles were covered and she has a few bumps on her nose. It's not very noticeable unless rubbing her skin, or looking for them. Maybe it's eczema?? I did call the transplant coordinators and they said it sounded like something Prograf would do and they did increase her dosage quite a bit. Maybe? I hope she's not allergic to Prograf... I really have no idea. They asked me to watch it and let them know if it gets worse. We have a pedatrician appointment on Monday, maybe he'll know what it is.. The good news is that it doesn't seem to bother her.
I know.. I know. I'm in trouble with many of you for not updating Maddie's blog. I apologize. I'm loving the blogging world and getting to know other families, but neglecting mine at the same time. So here it goes. It has been awhile, so if you will, please travel back to May/June timeframe with me.
I wanted to go back this far because this is when Madison finally hit a huge milestone...about two weeks before she turned two, Madison started walking! Yeah! I was so excited! It completely amazes me how much Madison's broken heart affected her development. (especially watching her development along side a twin.) There is a huge difference. Prior to transplant, her little body was too tired and weak to meet those much needed milestones. I've learned that those milestones are important and actually must be met throughout development. Post transplant, Madison has done amazing and is slowly catching up with her brother.
Fast forward to June 10. This was Cooper and Madison's birthday. I was an emotional mess that day. (since Madison's transplant, I can become an emotional mess at any moment... it's becoming embarrasing..) Last year at this time, I had no idea just what our little family was heading for. I had no idea that we were facing a hurricane...head on, BUT we made it!
I loved Cooper and Madison's birthday. Although we had a lot to celebrate, I didn't want to have a traditional birthday party this year. I just wanted to spend the entire day with my little family. Mark laughed at me as he would catch me tearing up every now and then. I loved being a mom on that day. I tried so hard to soak up every minute.
Cooper and Madison at the Aquarium on their birthday. June 10.
(dang, I didn't realize that I can clean highchairs so well. Those are shiny!)
We do have blinds on our windows,
however Cooper insists that the blinds be raised each morning.
Madison had hearts on her cupcake.
I am such a heart nerd. It's embarrassing. But I hope my nerdy phase never ends.
I'm still laughing... Cooper's cupcake is cute.
I asked for monkeys on his cupcake. I think those are monkeys??
I'm in love with this picture. Madison is so beautiful.
Dr. Everitt gave us the green light to travel outside of Utah.
We quickly ran away to my parents cabin near Jackson Hole. This picture was taken on their back porch.
It is so beautiful and peaceful there.
I do remember thinking... I wonder where the nearest Cardiologist is? That part was a little scary for me.
My Big Boy. He is absolutely adorable.
For the most part, his personality is quiet and gentle. Although his recent actions are beginning to create some stories.
Cooper knows every body part, including eye lashes and eye brows.
Madison is playing at the splash pad at Thanksgiving Point.
At age two, she is modeling her 12-18 month swimming suit.
(Our heart babies are so small...)
Cooper and Madison attended 4 weeks of 1-1 swimming lessons everyday. I'm exhausted thinking about those 4 weeks, BUT I really feel like it helped with Madison's development. I highly recommend this to parents. (Cooper and Madison are the first two babies.. I mean toddlers.. nope babies sounds better.)
Madison is diving (sort of). Once Madison hits the water, the instructor lets go of her. Madison knows to roll on her back, put her hands behind her head, and float to the top. This took awhile to learn, but she can do it now.
Fireworks on July 24.
8:00pm meds post transplant. December 2009.
Can you believe this? When Madison came home from transplant, she took 13 meds. I administered (such a big word for a mom) meds every 2 hours from 8:00am-8:00pm. Madison would then have a break until her midnight dosage. And then the game would start again the next morning.
Madison's current 8:00pm meds. July 2010.
Madison no longer takes meds every 2 hours. In fact, after her 10:00am meds,she doens't have any until 4:00pm. That big gap of time feels so weird. I keep thinking that I'm forgetting something. Madison currently takes 7 meds 6 times per day. Piece of cake.
Not only has Madison's meds tappered off, but so have her Cardiology appointments. Post transplant, Madison had Cardiology appointments two times per week. As of our last appointment on July 8, Madison does not have to return for 6 weeks. This is the longest timeframe between appointments that Madison has ever gone in her life. So good...
December 4, 2010:
Madison's Heart Birthday...
Dinner and celebration at Goodwood BBQ in Provo. 6:30pm. Everyone is invited!
December 9, 2010:
Madison's annual heart biopsy.
Miss Madison and her twin brother, Cooper were born June 10, 2008 at the University of Utah Hospital. Madison is diagnosed with Wolfe-Parkinson White Syndrome (abnormal heart arrhythmias) and Hypertrophic Cardiomypathy (heart muscle is too thick). Due to the Hypertophic Cardiomypathy, Madison's heart is unable to function properly. Currently, her little heart is working too hard resulting in the valves leaking and a few other symptoms. On October 15, 2009 Madison was listed for a Heart Transplant. She is listed as a 1B status.
UPDATE: On November 30, 2009, Madison was admitted to the ICU at Primary Children's Hospital for severe heart failure. We had hit our brick wall that Dr. Everitt explained might happen. Madison was pale, lethargic, and throwing up. Her liver was enlarged. It was obvious that we were heading in the wrong direction. Immediately upon being admitted, Milrinone (heart medication administered only through IV) was started. Madison also had to have a J-Tube placed (kind of like a G-Tube, but goes to the intestines rather than her stomach). At this time, Madison's status was changed to a 1A on the Heart Transplant List. On day 4 of being in the ICU, Mark and I were notified that a heart had become available for Madison. Our medical team believed this would be the perfect heart for our little girl. On December 4, 2009, Madison received the most sacred gift; she received her new heart. Thank you to our donor family. We love you.
One day my world came crashing down, I'll never be the same. They told me that my child was sick. I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved her for so long. I will not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child thrive. I'll even use that feeding tube. My child must survive!
Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate.
When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold her life, and guide us through each day. My mind says savor each moment she's here, but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "will she be alright?", to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line. I look to them and smile. You see MY child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to her beautiful NEW heart). God must have known how much I'd love her (Just as He loved her from the start).
A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, our hearts share in all of your tears.
Every day I will try and remember, I was chosen for her (and no other). I will always embrace that beautiful day.......When I became a "Heart Mom".